Sickle cell disease

Common Name(s)

Sickle cell disease, Sickle cell anemia, Hb SS disease

Sickle cell anemia (Hb SS) is a rare genetic condition. Hb SS affects the number or shape of the red blood cells in the body. Normally, the red blood cells are round and donut-shaped. They bring the oxygen we breathe from our lungs to different parts of our body. Those with Hb SS make some red blood cells that are crescent or sickle shaped rather than a round, donut shape. These unusually shaped cells do not last as long as normal red blood cells and die off. This can lead to anemia (a low number of red blood cells). The sickle or crescent shaped cells also tend to get stuck in blood vessels. When this happens, some parts of the body may not get enough blood. If red blood cells are not able to move through the blood vessels, parts of the body cannot get enough oxygen. Therefore, it is very important for our bodies to have an adequate number of red blood cells.

Those affected by Hb SS may develop signs and symptoms a couple of months after birth. The characteristic features of this condition may include pale skin, sleeping longer or more often, tiredness, difficulty breathing, pain or swelling in the hands or feet, and cold hands or feet. If untreated, this disorder can lead to organ failure and death. Many of these complications can be prevented with early detection and lifelong management with appropriate medications, fluids, and blood transfusions. Many babies are screened for Hb SS at birth so that treatment can begin early, however the conditions included in newborn screening differ from state to state. For more information, visit Baby’s First Test. Hb SS is an autosomal recessive trait. A genetic counselor can help you understand the genetics. Also talk with your doctor and specialists to decide on the best treatment plan. Support groups are also a good source of information.

Condition Specific Organizations

To ensure the availability and accessibility of quality and comprehensive medical care and support services for children and adults in northern Connecticut with Sickle Cell Disease and other related disorders.

The Sickle Cell Disease Association of America Southern Connecticut Inc. mission is to provide education,screening, counseling,and support services to persons affected with sickle cell disease and the trait.

The Foundation is proud of its ongoing efforts to meet and exceed its established mission by bringing innovative and creative programs (1) to provide financial and advocacy supportive services to persons diagnosed with sickle cell disease; (2) to provide treatment support to enhance the quality of life for those suffering from sickle cell disease; and (3) to educate the general public about sickle cell disease.

ASCAA is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, couseling, and supportive services to individuals and families at-risk for sickle cell disease.

The mission of the Children’s Sickle Cell Foundation, Inc. (CSCF) is to provide support for children with sickle cell disease (SCD) and their families to help them face the educational, social and economic challenges caused by the disease. Our commitment to sickle cell disease education and community outreach, and support for sickle cell disease research are natural extensions of this mission. CSCF is the sole provider of community based programs for children with SCD in Western Pennsylvania. Some of the programs offered by CSCF are the Educational Support and Learn2Swim.

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

To increase the awareness in Kern County about Sickle Cell Disease and trait and provide accessible services, including education, testing, and counseling with the ultimate goal of enhancing the well-being of the affected people and their families.

Our primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, the Sickle Cell Disease Association of Illinois (SCDAI) acts as an advocate for improved health care and services for individuals with sickle cell by educating and informing the community through outreach programs.

To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden public awareness about sickle cell disease and to promote medical research and education to ultimately find a cure.

Our vision is to be the most successful sickle cell organisation nationally with a wide network of well-informed, committed and active supporters working at local, national and international levels.
We will be better able to empower and assist people with sickle cell disorders to achieve their full economic and social potential.

How do you compare to others with this condition?

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Advocacy and Support Organizations

Condition Specific Organizations

Following organizations serve the condition "Sickle cell disease" for support, advocacy or research.

To ensure the availability and accessibility of quality and comprehensive medical care and support services for children and adults in northern Connecticut with Sickle Cell Disease and other related disorders.

The Sickle Cell Disease Association of America Southern Connecticut Inc. mission is to provide education,screening, counseling,and support services to persons affected with sickle cell disease and the trait.

The Foundation is proud of its ongoing efforts to meet and exceed its established mission by bringing innovative and creative programs (1) to provide financial and advocacy supportive services to persons diagnosed with sickle cell disease; (2) to provide treatment support to enhance the quality of life for those suffering from sickle cell disease; and (3) to educate the general public about sickle cell disease.

ASCAA is an organization that provides quality and comprehensive services through diagnostic testing, evaluation, couseling, and supportive services to individuals and families at-risk for sickle cell disease.

The mission of the Children’s Sickle Cell Foundation, Inc. (CSCF) is to provide support for children with sickle cell disease (SCD) and their families to help them face the educational, social and economic challenges caused by the disease. Our commitment to sickle cell disease education and community outreach, and support for sickle cell disease research are natural extensions of this mission. CSCF is the sole provider of community based programs for children with SCD in Western Pennsylvania. Some of the programs offered by CSCF are the Educational Support and Learn2Swim.

The Cochrane Collaboration is an international network of healthcare professionals, researchers and consumers preparing, maintaining, and disseminating high quality systematic reviews of randomised control trials. This review group focuses on genetic disorders such as cystic fibrosis (CF), haemoglobinopathies, coagulopathies and inborn errors of metabolism.

To increase the awareness in Kern County about Sickle Cell Disease and trait and provide accessible services, including education, testing, and counseling with the ultimate goal of enhancing the well-being of the affected people and their families.

Our primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, the Sickle Cell Disease Association of Illinois (SCDAI) acts as an advocate for improved health care and services for individuals with sickle cell by educating and informing the community through outreach programs.

To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden public awareness about sickle cell disease and to promote medical research and education to ultimately find a cure.

Our vision is to be the most successful sickle cell organisation nationally with a wide network of well-informed, committed and active supporters working at local, national and international levels.
We will be better able to empower and assist people with sickle cell disorders to achieve their full economic and social potential.

General Support Organizations

Recommended Apps

Anonymously share and see how your answers compare with others with this condition while privately providing key pieces of information to medical researchers, disease advocacy groups, and others ONLY YOU select to help speed up cures and better alternatives.

Finding the right clinical trial for Sickle cell disease can be challenging. However, with TrialsFinder (which uses the Reg4ALL database and privacy controls by Private Access), you can permit researchers to let you know opportunities to consider - all without revealing your identity.

Scientific Literature

Articles from the PubMed Database

Research articles describe the outcome of a single study. They are the published results of original research.
The terms "Sickle cell disease" returned 1893 free, full-text research articles on human participants.
First 3 results:

Reviews from the PubMed Database

Review articles summarize what is currently known about a disease. They discuss research previously published by others.
The terms "Sickle cell disease" returned 207 free, full-text review articles on human participants.
First 3 results:

Occult Hepatitis B corresponds to the presence of hepatitis B virus-deoxyribonucleic acid (HBV-DNA) in serum and/or in liver of a patient despite HBsAg negativity. Clinically, it is usually asymptomatic. Its reactivation is rare and commonly occurs in immunosuppressed individuals. ...

According to ClinicalTrials.gov there are currently 174 additional "open" studies for "Sickle cell disease" (open studies are recruiting volunteers) and 578 "Sickle cell disease" studies with "all" status. Visit ClinicalTrials.gov now to view them. Or alternatively, consider TrialsFinder for assistance:

Relief is when you and the right researcher find each other
Finding the right clinical trial for Sickle cell disease can be challenging. However, with TrialsFinder (which uses the Reg4ALL database and privacy controls by Private Access), you can permit researchers to let you know opportunities to consider - all without revealing your identity.